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Newbie with concerns

jjmb126
Posts: 15
Joined: Jul 2004

I haven't been diagnosed with uterine cancer and hopefully wont but would like some advice.

Briefly, I had an ablation with D&C 5 yrs ago where they found adenomyosis deep in myometrial. The Doctor was surprised by this as she was just expecting to find a polyp which was what the ablation and D&C were for. Anyway, she explained to me that that might cause more problems as time went on until I reached menopause which given my FSH number 27 could tomorrow, months or years ahead.

Fair enough, 9 months passed and I was back to the Doctor for scant periods and very very painful cramps. She prescibed BC pills to control the periods and fingers crossed my FSH levels were still 27, so menopause was around the corner. I had a ultrasound than show that my endometrial lining was at 0.501cm which is thicker than it should have been after an ablation and mysterious is inhomogenous which was consistant with a diagnosis of Adenomyosis.

I never actually saw the report for this procedure until I changed doctors so was unaware of the fact she had also found that the left ovary was enlarged with multiple cortical cysts as well as a resolving corpus luteum cyst and a hemorrhagic corpus luteum cyst. All cyst were incised and drained (but not tested). I am still in the dark as to what a cortical cyst is.

Jump forward to 2007 and I have changed Doctors as the other one during what I can only describe as a hormonal trip managed to hurt me badly during a pap smear and I ended up with my one and only UTI infection in my life! I had also stopped the BC pills as my periods were pretty much finished.

As my bleeding was very irregular by now, my new doctor ordered another fsh level and vaginal ultrasound. My FSH level was 29 and my lining ( which should be only about 2-3 mm after an ablation) was 10.1. As this was my first visit, she wanted to monitor me and ordered another ultrasound in 6 months. At the same time I had my first endometrial biopsy (didn’t have one before ablation) which came back clear By the time of my next ultrasound , the lining had thinned to 7.9 but a thin line of fluid was seen in upper lining <1 cm. The decision was to watch and wait.

By the time of the next ultrasound ( Aug 08) my lining was again 10.1mm and this time a cystic structure was visualized within the myometrial , posterior and adjacent to the endometrial (10x 8x 11 mm). I also had another biopsy which show scant endometrial tissue. The advisement was that despite being negative for malignancy, these finding should be considered carefully in clinical context to determine whether this adequately representative of the endometrial cavity. As my lining was thickening again she put me on provera to thin the lining and maybe flush away the cystic structure that had been observed.

I had my next ultrasound in Oct 08 after a course of provera when my lining had thinned down to 5mm and the cystic structure was again observed but measuring smaller 3x2m I also had my fsh level tested again which showed that my ovaries had been kick started and were now positively juvenile at 7.9 plus my thyroid levels were too high (I have an underactive thyroid ) So the doctor felt that that might be cause for very sporadic periods ( every 6-9 months) She also gave me a presciption for HRT as my menopause symptoms were out of control and driving me bats

Forward to April 09 , I never did take the HRT as I was concerned that with the amount of medication I was taking for my thyroid, high blood pressure and cholesterol, I really didn’t need to be adding to them. I had consulted with my family Doctor re the thyroid and although he was skeptical about the level causing my menstrual problems, adjusted my medication according to the new guidelines introduced a few yrs ago. He was reluctance to do it as he found that his patients were becoming depressed and uncomfortable with the new suggested guidelines, however I was fine. In fact I had a brilliant few months, no periods since the end of Sept 08 and more importantly the hot flashes disappeared completely!

April 16 09, Aunt Flo made an unexpected appearance and by now experienced , I immediately booked a ultrasound for the beginning of May. Also since then my hot flashes have returned with vengeance which is really embarrassing as sometimes I am sweating so profusely that it is literally flowing down my face as I talk to someone. The night sweats are even worse!
By now I knew a Biopsy wasn’t really any help due to the ablation , so I refused to put myself through that when it was suggested.
My ultrasound came back as Endometrium = 9.1mm difficult to evaluate due to fibroids
Cystic structure in posterior myometrium adjacent to endo = 6x4x7 mm (same as the one observed in the last sono but bigger)

It was decided that I have a D&C with hysteroscopy plus my FSH levels checked again. That came back as 49, so apparently in menopause.

I went for the D&C with hysteroscopy on Thursday of this week and the doctor despite trying for 40 mins could not open the cervix. She did do a biopsy though and as she has not called yet, is waiting for the results before talking to me. However she did talk to my Husband and apparently she is suggesting doing an x-ray with some fluid to determine the shape of the cystic structure in the myometrium and seems reluctant to do a hysterectomy.

So now, I am completely confused because this is the same doctor who when she suggested the D&C said she was very concerned that this was now cancerous. How will an x-ray, showing whether the cyst is circular, teardrop or undetermined, ( this is what she told my Husband apparently) help in the diagnosis ? Until this last test, I haven't been overly concerned to be honest, as I know that I have Adenomyosis which rarely progresses to uterine cancer from all the literature I have read on net. However, with my Doctor seeming to be running around like a headless chicken, now the doubts are beginning to overcome my logical brain.

Sorry this has been a bit long winded but I am really very confused and frustrated . Hopefully she will call tomorrow but I not confident that the biopsy will tell her anything different from before.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Has no one suggested a hysterectomy? It just seems like, with all the years of doctoring and worrying, that a hysterectomy would make life so much easier for you. And certainly, a hysterectomy would allow a definitive diagnosis on cancer or 'no cancer'. With the Da Vinci robotic surgery, hysterectomys are not as gruesome as they once were. Please let us know what the doctor says tomorrow. BIG HUGS!

deanna14
Posts: 734
Joined: Oct 2008

At the very least, I would seek a second, even third opinion if necessary. After everything you have been through, I would ask about a hysterectomy. Sounds like you have been through a lot.

jjmb126
Posts: 15
Joined: Jul 2004

just spoken to the Doctor and it turns out she couldn't even do an endometrial biopsy, just a cervical one, so she said I had 2 options - another ultrasound in July or hysterectomy now. So I am going to have a vaginal hysterectomy arranged. Anyone have any idea if there any contra indications to having a hysterectomy vaginally?

deanna14
Posts: 734
Joined: Oct 2008

I don't think there are any contrindications for a vag hyst. What were the results of the cervical biopsy? My advice is (and just my opinion), first, I would take my records and get another opinion from another physician. If you are going to have the hysterectomy and there is any chance that it is cancer then find a gynecologic oncologist to do the surgery. Linda is our statistics and research lady and I know she would tell you that statistically, survival rates are higher when the debulking hysterectomy is done by a gynecologic oncologist. In any case, I would not just sit around and wait until July to have another ultrasound. Simply my opinion.... I would go insane just waiting around that long. Good luck to you.

jjmb126
Posts: 15
Joined: Jul 2004

I asked for a referral so hopefully things will be resolved one or another soon. Thanks for all the support and I will post about any outcomes.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hang in there. YOu are taking the right steps. Hugs and prayers.
Mary Ann

jjmb126
Posts: 15
Joined: Jul 2004

I saw not one 2nd opinion doctor last week but 2! Boy! am I glad i did that because it turns out I probably wont need a hysterectomy at all. Went to the 1st doctor on Wednesday, told him my story about the D&C not actually happening because my doctor couldn’t get pass the cervix. So he had a look and said should be able to do a guided D&C (using a sonogram) no problem, could clearly see my cervix. Also said despite the thicken endometrial lining he really didn’t think I was a candidate for anything serious like cancer. Whew! that was a relief.
Friday was Doctor No2. First thing she said was “Dr C has terrible handwriting!” Anyway related my story, cervix not opening, probably due to ablation done in 2004, blah blah. She was puzzled “why couldn’t she get pass the cervix, it says here that she has done 2 endometrial biopsies in the recent past, which means she got pass the cervix at that time? Also you have recently had bleeding ( hence the need for D&C) so your cervix was open then!’ Basically she dished my Doctor. Next she said ” it (the uterus) has to be sampled, if it can’t be sampled it has to come out” but she was pretty confident that she could do an inoffice endometrial biopsy right then. And she was right! No only that, she was so quick it was literally like a long pinch as she promised. When she finished she was almost jumping for joy like a football player who had just scored the winning touchdown! She was so refreshingly down to earth and natural.

So now I have to wait for the results but like the doctor on Wednesday, she felt that I had a very low risk of anything adverse being found and if it was anything, could probably be controlled by hormones. I feel confident that they will be OK as both doctors seem to have the same opinion. Thanks to everyone for their advice and good luck with your journeys. Hopefully this will the extend of my concerns.

deanna14
Posts: 734
Joined: Oct 2008

Congrats on the good news! Let us know how the results turn out.

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

I am so glad they were able to do the biopsy, and the preliminary results seem very positive. Here's hoping the final results are just as encouraging. HUGS to you.

jjmb126
Posts: 15
Joined: Jul 2004

Got back my biopsy results today _ I had to call and talk to the nurse which was annoying- but the good thing is that nothing abnormal was noticed. However, try telling me that yesterday, as I was in so much pain yesterday I was almost crying. I think some bedroom exercise induced it as when I think about it the last time we were active was when I last had a bleed. Given that type of exercise (due to my lack of libido and his) is very infrequent, it not something I have linked to my periods in the past.

Any we will see how it goes, got an recommendation from the Gyn Onc office for a regular gynecologist and fingers cross the rest of my menopause will be uneventful.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Congratulations on your great news....NO CANCER! That is wonderful. Sorry you are having so much pain. Maybe your new gynecologist can help you with that. Sure hope so!

Hugs

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